Patient Advisory Groups in Diabetes Research: The Perspective of a Youth Advisor
As a Knowledge Exchange Coordinator for the Developmental Origins of Chronic Disease in Children (DEVOTION) Network, my work supported stakeholder and patient engagement. One example is a patient advisory group for the Improving Renal Complications in Adolescents with Type 2 Diabetes (iCARE) Cohort study. Put simply, iCARE is an observational clinical study designed to address the high rates of kidney damage in youth living with type 2 diabetes (T2D). Beyond biological risk factors, this study is also exploring the psychological and social risk factors associated with kidney damage in youth with T2D.
This advisory group is made up of Manitoba youth living with type 2 diabetes and their caregivers. The main way that I support this group is by facilitating in-person meetings and helping to carry out priorities identified by the group. We meet five times a year to discuss research priorities, provide feedback to the researchers, and share the latest study results. They recently made a video to share what it’s like to live with type 2 diabetes, and are currently working on a booklet as a way to support newly diagnosed kids.
In my previous post, I spoke with Brandy Wicklow, the co-principal investigator for iCARE, about building patient engagement into diabetes research. But I also wanted to get the perspective from the iCARE advisors themselves. I sat down with Shayna Quoquat, one of the youth advisors within the study, to learn more about how and why she got involved in research (and why she stays involved):
Tell us about yourself and how you got involved in health research as an advisor?
“My name is Shayna. I’m 17 and a half (turning 18 next month). I grew up in White Dog, Ontario, but have been living in Winnipeg for most of my life. I was diagnosed with type 2 diabetes in September 2009 when I was 8 years old. My grandma and her siblings had type 2 diabetes on my father’s side, and a lot of aunts, uncles, cousins have it on my mom’s side. My mom and I both have it.
I got involved about 6 years ago with health research. I joined the iCARE study as a participant, and then later joined Beating Diabetes Together, a program that helped kids manage their diabetes through the DER-CA clinic in Winnipeg (Editor’s note: DER-CA stands for ‘Diabetes Education Resource for Children and Adolescents’ and offers specialty services to youth under age 18 years with Type 1 or Type 2 diabetes). It was led by some of the same researchers. I was asked to join the iCARE study as an advisor in 2015 and joined because my mom encouraged me. She became an advisor too.”
How has this advisory role been valuable to you?
“I like being an advisor for iCARE because I get to share my experiences with others. I like that we all come together to talk and discuss issues related to type 2 diabetes. I like that our group involves both families and researchers. Now these doctors understand how the patient feels, and we can better understand each other.”
Improving relationships between patient and doctor:
“I feel like I got to know my doctor and she got to know me. Every time I see her now, we talk about what would work better for managing my diabetes. She has helped me to understand how my medication works, find which medications work better for me. She’s helped me set reminders for myself and find specific times of the day that work best to take my medication.”
Learning more about self-management:
“I’ve learned more about type 2 diabetes because of the advisory group. We talk about things going on in the study and it’s helped me to realize how my diabetes is linked to everything. Things like my mood or my sleep patterns — that’s tied to my blood sugar levels.
I was always into sugar, now I work hard to control what I eat. Seeing other people’s lifestyles have influenced me to get better. We have less junk food in the house and my family goes to the gym together or try to fit in at least an hour of physical activity in my daily schedule.”
Improving an understanding between mother and daughter:
“My mom didn’t know how I felt with my diabetes until we joined the iCARE advisory group. I can open up more when we talk about diabetes as a group, and now my mom and I know more about each other and feel comfortable about how we’re feeling.”
What challenges have you faced within the advisory group?
“Sometimes it can be intimidating to speak in a room with adults and parents. I don’t like when parents speak on behalf of their kids. It’s important to allow people to speak for themselves, people don’t always know how we’re feeling.
At the beginning, I didn’t feel comfortable talking right away with people in the group. But I started to talk to Sayma one on one because I felt comfortable with her, and she encouraged me to speak up when we talked as a group (Editor’s note: Sayma was the group facilitator for this group before going on maternity leave).”
Why is it important to do research on kidney damage in youth living with type 2 diabetes ?
“Raising awareness and providing more support for people living with type 2 diabetes are steps to make things better. Knowing why people with T2D are getting kidney disease is important too. Understanding why young people get kidney disease is kind of the same as understanding why type 2 diabetes is happening in kids because we need to know more about why it’s happening and how to prevent it.
Kids need to learn how to prevent getting type 2 diabetes because it’s a serious thing, it changed my life as a child when I was diagnosed. Kids are going undiagnosed with diabetes and they need to know how to manage it and take care of themselves when they do have it.
I’ve learned a lot about type 2 diabetes and I continue to learn the research side of T2D now working with Dr. Jon McGavock. It helps me think about my own diagnosis and how I can help to change things for future generations. I think about my nephew, niece and my future kids and their kids and how we need to stop diabetes from happening and for myself to get better.”
About the Author
Shayna is a 17 year old living in Winnipeg, Manitoba. She graduated from Dakota Collegiate and is a research assistant for Aboriginal Youth Mentorship Program (AYMP). She is also a youth advisor for the iCARE study.